FaTHoM day 2026: Supporting families affected by inherited MND and FTD
FaTHoM Day 2026 was held at the University of Oxford on April 30, bringing together families affected by inherited motor neurone disease (MND) and frontotemporal dementia (FTD). Presentations covered tofersen results, genetic counselling, genetic-risk assessment and research studies including GENFI. The event also shared opportunities for families to connect with researchers and consider taking part in research.
Why this matters
The event is relevant to people living with inherited MND or FTD, their relatives and people considering genetic testing. It provided information about research and trials, including a developing artificial intelligence tool intended to support genetic counselling and digital monitoring tools being added to the GENFI study. These projects are still being developed or studied and do not establish a new treatment or change current care.
Limitations and context
This account comes from an organisational blog published by the Motor Neurone Disease Association, not a primary research paper or independent event report. FaTHoM Day was a community and information-sharing event, so the source does not provide new trial results, study sizes or peer-reviewed evidence for the projects discussed. The artificial intelligence genetic-counselling tool is still being developed and will need testing to assess whether it is appropriate.